June 2017 Surgery Group
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day 9 and a bit better every day but some steps backwards in pain. I have big inflammation under left arm where they removed lymph nodes and tightening of chest under where breasts were - think they are stitches and expanders but they said warm compresses and lite massage - and i have a history in NYC of stuff like this BEFORE a holiday weekend, when you can never find any medical people around so i had it checked and they said do above. My sleeping inconsistent but i expected that. Inspired by everyone encouragement and prayers to Houston area - a lot to deal with there! illimae and others - thank you thank you - your posts are so wise and helpful and realistic and inspiring. My skin is so crackly - maybe its the soap or post anesthesia or just aging. i must say, I am a control freak at times and this is making me have to embrace my "inner hidden slob" by letting the apartment go to hell without picking and straightening up messes everywhere. i feel like Norma Desmond in "Sunset Blvd" or Big and Little Edie in "Grey Gardens" for those movie fans out there! Also, I have a great group of size Large and XL shirts - both short sleeve with snaps or button ( drain pockets inside - really practical) and sleeveless pretty tunics ( velcro at top of shoulder to step into) to give, donate or send to anyone anywhere - suggestions welcome - some never worn! other 2 totally clean. xox to al
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hi everyone
Toughie ..glad the drains are out. For me I had sharp pain due to the tissue Xander...like barbed wire digging in; got better as they did fills and it lefted off the rib cage. Hang in there ...it does get better
Ouray.... taxol kicked my butt too. Aleve helped with the severe body pains . Ask your doctor about tryign an antiiflammatoey
Sending prayers and best wishes to all our ladies in Houston
Xoxo Tara
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thanks, all. I am 2 weeks post surgery. i go for my first fill this upcoming week but have already had a swollen area 9 by left breast0 aspirated and its forming again... pain int he you know what. but i had reconstruction at same time on Aug 25 at BMX but i feel a CONSTANT prickly burning sensation all the time in my breast and a little in my back/ is this normal? .. like my skin is on fire? the barbed wire tightening feeling goesa bit better little by little every day. i hate taking the meds - so i down to 2 xtra strength Tylenol a night - maybe that not enough... do you know the burning feeling? Thx
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dear toughiebird --the burning feeling is due to the nerves that were cut with mastectomy. It will settle down. It does take time to settle down. Gently run your fingers down your skin when you feel that sensation--that seems to help me. . Neurontin may also help . Sending healing wishes your way
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ThanksTara17 - always good to hear from others that im not going crazy alone in this - much appreciated and grateful!
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toughiebird --we all need each other through this. No one else really gets It, not even the doctors ---these symptoms are all unsettling, so knowing it will gradually improve helps us all. Def ask about neurontin _--i think it has helped me greatly, i happened to be on it for neuropathy after chemo anyway and i think it's helped me with these post mastectomy symptoms
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Toughie, oh boy do I know that feeling well. I hated it. It felt like a bad sunburn in my armpit and towards my back. It really bothered me to have my arm down and the skin touching anything. It was the absolute worst during week 2 and 3..... then started to slowly feel better. Personally around week 6 it was more annoying than painful and by week 8 was mostly numbness. I sat around with my arms up a lot.... like in the corner of the sofa and arms up on the back. I went back to work at 3 weeks. (do not recommend.... i am still mad at my surgeon for not signing off more) it was not a great experience working with burning armpits.
BTW i used my stronger pain prescription meds at night. A girl has to sleep to heal.
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Today, I spoke with a researcher at Georgia Tech who's part of a team working on improving post-mastectomy expander implants. They're looking to talk with as many women as they can; it was a quick (15 min?) phone call. He asked me to share his email if you're interested in discussing your experience: Chris Hardin at chardin6@gatech.edu
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JenRuns, I just realized that we are both in the TSCFriends support group on Facebook too! We must live pretty close. I'm in Shelby Twp. Where are you getting treatment? I am at Troy Beaumont
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how funny!!! Small world,,. I'm in Sterling Heights and getting treatment at Beaumont Royal Oak (I work there). Feel free to send me a friend request if you're into that
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Hey all - I had my left breast removed July 6 without really understanding that a bilateral mastectomy was an option. Now I've scheduled the right side mastectomy (prophylactic) for October 16. My remaining breast is really dense and has had several biopsies. Some of my benign lumps are actually visible - it looks like a marble under my skin. I'm told I can skip the Tamoxifen since I had DCIS and I won't have any breasts left. I wish I'd known that I could have done both at once. I feel a little grief/depression that I'm doing this all over again. No reconstruction, so at least it's a quick recovery. Y'all am I sane for doing this? I have a 15-27% lifetime risk of a second cancer. I can't imagine keeping the breast and continuing with the biopsy cycle. but I feel a little silly getting it removed so soon. However, if I had a second and it was invasive, I'd be sorry I didn't remove it. Can you offer any perspective?
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Absolutely no reason to feel silly. We make decisions based on the information we have at the time. I'm sure everyone here would modify some decision if they had all the information and a crystal ball into the future. At least you know what to expect this time so perhaps that will help
I chose BMX partly because of my very cystic breasts and difficulty finding things. I did not want multiple tests and biopsies every year. Good choice on my part as cancer was found in that breast too.
You have to do what you are comfortable with.
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SBKH - i agree. I agonized over this decision since May, and am now 3 weeks post surgery from a prophylactic bilateral mastectomy and reconstruction - i was lucky to have a lot of information while making my decision (about uni or bi) but my stats ( with the DCIS in the left breast found, family genetics and a check 2 mutation) were similar - a 15%-25% chance of a new or (re occurrence) in the other breast - so everyone has to make their own choice but for me, that was too high and risky to be looking over my shoulder every 6 months with biopsies, MRI, false diagnosis, ultrasounds and mammograms, I also have had multiple biopsies over the years, benign but lumpy, fibrocystic breasts, hard to find everything. I kicked and screamed and nagged my way thru so many medical consultations to "get someone to TELL ME what to do or that i was doing the right thing: and finally went with the realization that i had to decide myself with the knowledge, info, gut and stress level tolerance for ME. While I am in short term recovery pain, etc. I have no regrets. if you are looking for some support, I am giving it to you - that I think you are doing the right thing for you. Good Luck
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SBKH, I think you're doing the right thing... the peace of mind alone is invaluable. As for "so soon," ... you know what to expect and it's less worrisome for you later. I give you tons of credit for making the decision.
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Thanks for the support, ladies. That's a big help. While I'm not feeling "at peace" about another surgery, when I imagine the regret I might feel should I have a second cancer in the contralateral breast, it feels like the right thing to do. I am super lumpy. And honestly it never worried me to be lumpy because biopsy after biopsy and year after year, none were cancerous. So even when they found this one, I was sure it wasn't cancer until I was actually looking at the pathology. Part of me is curious if my healthy lumpy side could have some abnormality that just hasn't been picked up on the scans. A few weeks before my unilateral mastectomy, my non-cancer side had a new lump found by the MRI they have you do prior to surgery. I really wished I'd asked for bilateral then. I'm actually more nervous about the prophylactic surgery since it's elective. That said, my last recovery was pretty good, so hoping for same this around. Couldn't do any of this without this group. Thank you!
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SBKH -- there is no such thing as silly when it comes to such big decisions! We, each one of us, makes the best decision we can based on our understanding of information at a very emotional time. No one wants to go though major surgery ....so the path that gives us the least regret is the one to pursue . And that is different for each one of us. You are a strong, brave woman and we are 100% here to support you on this path . As I recall, managing the drains was one of your concerns --and it's probably easier on you to do drains one at a time with a staged bilateral mx rather than both at the same time. I hope no one is making you feel silly about this , since I also think that's the second time you have used this word in your posts, regarding the other breast,if i am not mistaken ? My aploogies if I a. m mistaken You are brave and strong ! Please let me know the date and time and I will be sure to keep you on my prayer calendar that day
Xoxo , big hugs
Tara
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SBKH,
Know it's hard facing another surgery, but you are very strong and will do great! Never second guess your path. As Maya Angelou said " Do the best you can till you know better. When you know better, do better." All of us have had a big learning curve through this experience. You did the mastectomy and didn't realize bilateral was an option. That is NOT on you! The doctor should have made it very clear. That being said, the past is the past. But now you do know the options you have. The removal of the other breast will give you peace of mind - you won't have any more mammograms, biopsies etc. and you won't have to worry about developing another cancer in that breast. For what it's worth, a couple of my close friends only had the single and about 3 years later, they both developed cancer in the other one. Unfortunately, one had triple negative in the second one and it's been very hard. Both told me to have the bilateral and not look back. Very glad I did and you will be, too.
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My daughter is getting married Nov. 4th. Should be two weeks after my 1st ac treatment. Will I feel okay two weeks after? Any suggestions? I really want to enjoy the day and be at my best. My son-in-law lost his mom to cervical cancer in June of last year.
Also, how is everyone doing? Can't believe it's almost October and it is amazing what we have been through and overcome the past 4-5 months.
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Hi all, I'm doing well. Just finished 30 rounds of radiation yesterday and now I continue on Herceptin and Perjeta every 3 weeks, xgeva shots for bone strength every 6 weeks and tamoxifen daily. My post surgery range of motion is about 98% and improving, I only see my physical therapist every couple weeks because she knows I do my stretches and actually said to be less of an overachiever, lol.
I'm back to 9,000-10,000 steps/day and am doing a 5k next month, so far no lymphadema issues but I'll wear a sleeve for the walk, just in case.
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Ouray, everyone is different but in my experience you should be fine two weeks out from AC. Just make sure you get some rest that week and don't run yourself ragged. I really only felt bad the day of my AC and I think it was more the benedryl and other premeds that made me very sleepy and then wide awake due to the steroid. Hopefully, you will sail through also.
I'm doing well overall. Still working from home but that is more out of laziness and convenience more than anything else. I'd rather just avoid construction traffic and kind of enjoy working in shorts at home. Completed 26 of 33 rads. Red, itchy and peeling but the end is in sight. Then tamoxifen until we restest for menopause in January. Might switch to an AI after that.
Hope everyone else is well.
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congrats illimae!!
Ouray, you should be ok ...I found the weekend of AC to be the hardest. And with it being your first dose, the next weekend you will likely feel fine. May want to slow down and plan for some downtime
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SBKH, I had a UMX, and have been wondering lately if that was a mistake. I feel you.
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Hi Ladies, I have been living in chemo land for a while so sorry I have missed posting here.
SBKH good for you for following your gut. The medical profession works on statistics. Fine for them but if you are a negative statistic it is 100% for you. IMHO you are doing the right thing to follow your gut. I am a uni and wish I had gone for both. I may do it yet but need to get through chemo first.
Ouray I am not doing AC but I am doing TC. The first week after infusion is the hardest and then I am fine. I hope it works out for you. The effects are cumulative and as has been said the first should be just fine.
I’m managing chemo and can’t wait to be finished. Just starting to get crazy nerve zingers in my chest and underarm. I’m doing PT and it is helping but probably stirring things up. I can’t beli Ce it has been three months already. I can’t wait to be done with everything.
Continued prayers for all of you.
Hugs,
Susan
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Tara - the past few months I have so appreciated your whole hearted caring and support! Thank you for reminding me I'm brave. I briefly forgot! My surgery is scheduled for October 16, 7:30am ET - can't say goodbye to that bag of marbles fast enough. I'm looking forward to a biopsy-free life and to being even. It's been super strange to lopsided. I thought it wouldn't bother me, but it does. I haven't bothered to get my prosthetic, so I watch what I wear as camouflage. I do like that when I run, only side bounces now - so can see that it will be even better when there is no bouncing. It's also been to have just one side/breast hurt when I get my period. I'm nervous that I'm tempting fate - but better just to get it over with.
Ourray - I'm so sorry your uni friends developed a second cancer - but I appreciate your sharing that. It helps me confirm I'm not nuts doing both so close together. I'm so glad you have a wedding to look forward to and that you hopefully will feel pretty good for it. I hope it's a perfect day!
Illimae - you are an inspiration! I'm so excited for your 5K. And you rocked physical therapy! What's your secret? It's been kicking my butt. The cording/pulling are just so gross feeling. I need to be like you and over-achieve. This is such a great time of year for a 5k - I hope you thoroughly enjoy it.
Legomaster - I'm so glad to hear you have the flexibility to work from home. Not having to commute is incredible. Especially while you're still red and itching. Thank goodness the end is in sight.
JenRuns - how are you doing? Are you getting close to being yourself with running?
Leatherette and Susan - my uni buddies! Leatherette - I hope other than wondering if it was the right thing that all else is good and you're feeling really recovered. Honestly - I didn't feel truly like myself til about 10 weeks out. I'm hoping this next one goes faster. Susan - how much longer is chemo? Are you still in PT? I hope you're done soon!
All - thank you so much for all the love and support. I would have driven myself completely crazy without you all. I'm going to stay with this board for my October surgery rather than head over to the October group. I'm sure they are lovely - but you all are awesome.
This week - Thursday and Friday, I'm having fmri guided ultrasound to ablate some fibroids at Mayo in Rochester. Yay for no incisions, but boo for laying awake in an MRI machine for 4 hours. I just was not ready for more major surgery - but need to get the heavy cycles and anemia stopped. Have any of you had this procedure? Just curious.
Much love and prayers!
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SBKH: Love that you find the upside to it all
I haven't resumed running yet ... halfway through chemo (Taxol #3 today) and my heartrate gets really high just walking. Plus the expanders just feel weird. Oh, and I've gained about 10 pounds since surgery, which adds to all of it. Ah well. Walking every day (1.5 miles) and longer on the weekends (4-5 miles on Saturday and Sunday). I'll get there... eventually 0 -
JenRuns - wow - 1.5 miles is amazing. So is 4-5 miles! When I say "run" for me I mean - run for 2 minutes - walk for 2 minutes (Galloway method). And I'm barely making it to 2 miles... but it's a start. At this point, happy to be where I am. Not happy to start over though... I forgot you had expanders - I bet that does feel super weird. I'm not sure I'd want to try to bounce those... Yay for being halfway done! I'll keep you in my prayers for the second half to go well.
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SBKH, I've been walking most days and eating good, real food steadily for a couple of years now, before cancer. I did my best to keep that up during all courses of treatment (part of the reason doing nothing because of the darn drain annoyed me so much), I absolutely believe that activity lessens fatigue and I think I've just been lucky too with minimal SE's.
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I wish I was eating well! I love that you are setting such a great example of treating yourself well.
I've got to confess - I'm sticking with simple carbs and sugars, with a little ground up protein. I tried to do 80% produce/whole foods and had the worst gastroparesis flare ever. So I met with the nutritionist who works at my PT's office and she's recommending I stick to the gastroparesis diet until surgery (mashed potatoes, smoothies, soups, crackers) and then she will work with me on how to gradually change over my diet. Sadly, I'm using this an excuse to eat a little junky.
Diet and sleep are so foundational - as a mom I know this. Keep setting the example, ladies. I'm steadily working towards getting my nutritional ducks in a row... In the meantime if you have any soft/cooked healthy, easy to prepare recipes or favorite cook books - would love to know about them.
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Oh, I totally agree with you on sleep. During chemo, the steroids kept me up (I'm normally a great sleeper, falling asleep in two minutes), so I told my office that I must have at least 7 hours per night and was no longer setting an alarm, I'll get in when I get in. It was great but now I'm back to work full time and am constantly fighting the control freak/burning the candle at both ends side of me. Mediation was recommended by the integrative medicine doc, so I'm using the "headspace" app nightly, so far, it's relaxing.
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I'm a terrible sleeper. I have a busy brain and when I finally lay down to sleep it gets to work on all the things I didn't get to during the day. I'll check out the Headspace app.
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